Tuesday, January 22, 2013

A Broken Heart

My heart is broken.
As if it were not bad enough that my dad passed away a week ago
the tragedies don't seem to stop

my uncle visiting for the funeral was rushed to the hospital for internal bleeding over the weekend
my cousin was taken into emergency surgery the same day as the funeral for a mass on her brain -- no conclusions yet, but the prognosis is not good
Tom's sister may be in a severe medical condition -- undiagnosed at this time -- out of work for a month so far and probably at least another month to go -- we get information from his mom so its vague

What else is going to happen?
How many challenges can we face at once?

This is heartache I have never experienced

Thank goodness Tom is doing ok
I just couldn't bear it if he were to have a medical issue right now

Each moment, I feel a clench in the belly and say to myself
breathe --  in another minute, the panic will go away

I look at my mom, the amazing person that she is
she says, all you can do is go on....
one step at a time, one day at a time
I need to learn from her
but what other choice do we have?

breathe
make dinner
write in my journal
read a book
work
sleep
(in no particular order)
repeat

sigh..............

Wednesday, January 16, 2013

Death

He died on Saturday night, the funeral was Monday morning, we are "sitting Shiva" now
I would like to write about it
but not yet
thank you for your notes
they are meaningful to me
I will share, because death, like diabetes, is a process
and living through the death of a loved one
particularly surrounding my a large loving family
is wonderful and burdonsome all at once.

Friday, January 11, 2013

Hospice


This is awful!
And, truly there is no one to blame -- although my family is trying
let me try to sum it up

since Tuesday, dad has been suffering -- his body is slowly dying
and it is not an easy process
its awful to watch -- he is pain 45 out of every 60 seconds
and it is spasms

my mom - didn't like the hospice staff from the beginning
she is not a shy person
but is of an age where authority still is authority
so she would not request a different nurse/team
but then when she didn't like  the medicine dosages prescribed, she didn't administer them as prescribed
at first she was open to have him go to the Hospice facility, but now that a bed is available, she changed her mind and said no
She really dislikes the primary nurse in charge of dad's care and doesn't trust her
everything else from there is tainted
each day the medication routine has been changed
but mom doesn't comply and then doesn't understand why it doesn't work
she said today that she thinks he is over-medicated

sister #1 is angry but feels as if we should comply with the rules, take copious notes and complain after everything is over.  "we don't want to make the nurses angry because that may negatively impact dad's care"

sister #2 is very angry and thinks the medication dosages are wrong and interacting badly -- but she just complains to us -- never directly with anyone at Hospice (which is ok -- just observing)

sister #3 is also very angry but she believes that Hospice needs to be doing a better job overall.  She has spoken to supervisors and managers at the Hospice and raised the level of concern regarding dad's care.  we think that is what led to the bed becoming available at the facility.  that would be ok -- but mom is now saying no to that.

she asked why they can't give that level of care at home.  the nurse tonight said that the medicine delivery mechanisms they have at the facility are different and they can manage the meds more continuously and steady that way.

does this make any sense?
I'm not sure...

frankly, I'm not angry just exhausted

I don't really blame the hospice people
they give you advice, you don't follow it
then how can you blame them when the results are not what they predict?
at one point I tried to say this
but I was shouted down

I know, I'm perfect  -- Not!
its just that my family is so loud in its process
this is not new
we play our roles -- and I'm learning that the death of a parent makes these roles more pronounced

tonight I see things better than I did during the day
it helps to write it out

Now, maybe, some sleep????

Wednesday, January 9, 2013

Losing my dad....



I’m so sad.
Don’t know if I’ll get a call that he’s gone or if I’ll be there
Really, he is already gone – he is not my dad anymore
Just a body in pain
But it really hurts
I’m not so good at talking about it
And my family is – well my family
I am just sitting here thinking about what life is going to be with him really gone
And, I know… I know…..
But still I’m crying….